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MikeyBikey - The Road Back

That's good news Mikey. I hope the consultant can answer any questions about your rehabilitation going forward.
Hoping the weather is not too hot where you are. Take care x
 
It was a very positive consultation witj the to the unit. Im fact my best consultation since my last one with him. We both remembered each other from five years ago and both rather greyer.
.
He had been through the meds with the pharmacist and agreed there were too many! One that is being reduced from today (it cannot be stopped immediately as the withdrawal symptoms can be very unpleasant). It is Amitriptyline which he thinks id an ineffective pain killer but amongst other things constipation, a dry moth and urine retention all of which I suffer from to some degree. He also restarted the Tamsulosin I have on for over five years. He cannot see any reason like interaction with other meds or understand why it was stopped by the hospital

As for the rash on my leg believes it to be an allergic reaction to a dressing or something else (eczema).


He is contacting the lead consultant to the ward to find out what exactly is being treated with the multiple antibiotics and if they are all necessary.

Overall a really that makes me feel more positive about things.

And to finish off the day the physios clapped me out the gym for being the first person to do 4km (actually 4.1) in 15 minutes at Level 3 on the handbrake!

Sadly my BG before supper was 12.7! I pointed out that they had reduced my dose at breakfast but again they said it was low in the morning,! I feel I am talking to myself at times! :(
 
MikeyBikey said:
It was a very positive consultation witj the to the unit. Im fact my best consultation since my last one with him. We both remembered each other from five years ago and both rather greyer.
.
He had been through the meds with the pharmacist and agreed there were too many! One that is being reduced from today (it cannot be stopped immediately as the withdrawal symptoms can be very unpleasant). It is Amitriptyline which he thinks id an ineffective pain killer but amongst other things constipation, a dry moth and urine retention all of which I suffer from to some degree. He also restarted the Tamsulosin I have on for over five years. He cannot see any reason like interaction with other meds or understand why it was stopped by the hospital

As for the rash on my leg believes it to be an allergic reaction to a dressing or something else (eczema).


He is contacting the lead consultant to the ward to find out what exactly is being treated with the multiple antibiotics and if they are all necessary.

Overall a really that makes me feel more positive about things.

And to finish off the day the physios clapped me out the gym for being the first person to do 4km (actually 4.1) in 15 minutes at Level 3 on the handbrake!

Sadly my BG before supper was 12.7! I pointed out that they had reduced my dose at breakfast but again they said it was low in the morning,! I feel I am talking to myself at times! :(
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The rash could very well be from the dressing, I had a rash from the Compore E dressing after my knee surgery, antihistamines and an topical cream based on fusidic acid and ureawas very effective.
 
MikeyBikey said:
One that is being reduced from today (it cannot be stopped immediately as the withdrawal symptoms can be very unpleasant). It is Amitriptyline which he thinks id an ineffective pain killer but amongst other things constipation, a dry moth and urine retention all of which I suffer from to some degree.
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Good luck getting off that. I find it a very effective pain preventative but it is hard to get off. I’ve eventually reduced my dose from 20 to 10 but don’t really want to go any further down
 
I have come off Amitriptyline because it was making me awfully groggy on a morning and I was struggling to wake up and get going plus my BP had risen a bit since I started taking it regularly (a year and a half) and I suspected it was responsible and wanted to check and it has come down slightly, except when I wake up with my heart pounding from the bad dreams of course!
I am about a month off 20mg a night, cold turkey and the worst effect for me is really stressful dreams/nightmares every night waking me up repeatedly. I wish I liked horror films as I could save myself some cinema fees! I was getting very vivid dreams with the medication but they were not stressful at all, now they are really persistent and stressful.
I am holding out until after Wed this week when I have a very early start and will be driving and can't afford to be groggy but if still bad after that, I will go back to 10mg maybe every other day and see if that stops the bad dreams. Gut is upset too and I am needing paracetamol most nights for what feels like an impending migraine. Otherwise I am managing!

Not looking forward to going to bed but at least I am getting up early just not in a nice rested sort of way. By 4.30am I have to give up trying to sleep as the dreams are just too horrid to make it worth trying. I am trying staying up later tonight to see if I can last longer before the dreams start.
 
I can also empathise with those who have found coming off amitriptyline a bit problematical. It was the first thing I took to try and control my facial neuropathy. It did not work on the neuropathy and made me drowsy, so I stopped it and for a few weeks I had the craziest psychedelic dreams you can imagine. I stuck with it and they eventually stopped.

Good luck with coming off it @MikeyBikey!
 
Well, I caved and took one late last night hence very late posting on the forum this morning, but so relieved that it stopped the bad dreams immediately. Feel like I have been hit by a steam roller today and hoping I can wake up in the morning and get going early but definitely won't be taking one tonight.
@Docb How many were you on and for how long? And did you gradually decrease or just stop them?

I was nearly 4 weeks down the line and the dreams were getting worse rather than better. I'll be chewed off if I have to go through all that again because I took one last night! I take them for mental health rather than pain so struggling with those side effects has been harder.

I wasn't sure at first that the dreams were linked as it took about a week for them to start but then they got progressively worse, so this has been really helpful to read that others have experienced this. My BP has gone up whilst taking them and they are wanting to medicate me for BP but I now suspect the Amitriptyline is responsible for raised BP and I don't want to be taking tablets to combat side effects, so I wanted to see if stopping them would drop my BP which it has. I also suspect they have been partly responsible for some weight gain, but jury is out on that. Not saying they haven't helped me, because they have but you have to weigh up the benefits versus the adverse effects and decide what's best. I have taken them short term in the past for a few days or weeks when I have been in crisis with my mental health and that got me over bad patches without the withdrawal effects, so maybe that is the way to use it for me.

Sorry to hijack your thread Mikey. Hope you manage to come off them more smoothly. I have to say the sleep when I was on them was pretty amazing, but just didn't want to wake up.
 
Following this discussion about amitryptiline with interest as hubby takes 20g daily for nerve damage to his right eye from several years ago. His dose was increased a couple of years back to stop the recurring headaches it caused. I wasn't aware of the possible raised BP side effects or withdrawal symptoms. I hope you don't have any problems Mikey.
 
In answer to your questions @rebrascora - can't really remember and it was in the days before I began to keep my records. My memory is that the dose was slowly built up to the point where the downsides outweighed the fact that there did not appear to be any upsides and I will have slowly reduced the dose. My dreams were not horror - just what ever action there was was going on with an amazing kaleidoscope of colours and shapes. They disappeared after a week or two. Absolutely weird!
 
@Docb I got the weird psychedelic dreams when I was on them but these nightmares were something else when I stopped and they were getting worse instead of better as time went on. Really unsettling and making me not want to sleep.... and normally I LOVE sleep. It clearly has quite an impact on the brain to do that to you so long after you have stopped them.
 
I dropped mine from 20 to 10 very slowly, at first taking 15 once every few days and 20 the rest, then very slowly moving to alternating 15 and 20, then 15 every day, then repeat till I got down to 10 every day. I can’t drop below 10 as the headaches and nerve pain come back which is what the amitriptyline is treating for me
 
Thanks @Lucyr that is useful to know.
 
I was started on 50 mg Amitriptyline shortly after my first admission in early February. This had been reduced to 40 mg with the intention of reducing it a further 10 mg each fortnight (i.e. a two-month withdrawal). I had more foot pain than usual last night so fingers crossed it was a one off!
 
Blooming heck Mikey! How did you ever wake up on 50mg? No wonder you have been struggling with the Wordles. I thought it was just all the distractions and interruptions in the hospital ward not that you were drugged up to the eyeballs! Good luck coming down slowly from that high dose and fingers crossed last night's foot pain was just part of the healing process. Did that dose of Amitriptyline help with the phantom pain from the other foot?
 
rebrascora said:
Blooming heck Mikey! How did you ever wake up on 50mg? No wonder you have been struggling with the Wordles. I thought it was just all the distractions and interruptions in the hospital ward not that you were drugged up to the eyeballs! Good luck coming down slowly from that high dose and fingers crossed last night's foot pain was just part of the healing process. Did that dose of Amitriptyline help with the phantom pain from the other foot?
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No! I at times would go after to sleep till about 8:00 after the silly o'clock wash, have breakfast and go back to sleep. I put it down to being ill but am now thinking... (thinking emoji)
 
rebrascora said:
Blooming heck Mikey! How did you ever wake up on 50mg? No wonder you have been struggling with the Wordles. I thought it was just all the distractions and interruptions in the hospital ward not that you were drugged up to the eyeballs! Good luck coming down slowly from that high dose and fingers crossed last night's foot pain was just part of the healing process. Did that dose of Amitriptyline help with the phantom pain from the other foot?
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Those early days when I restarted just Wordle were difficult as I would drop off at various stages so a multi-word puzzle was way beyond me beyond me!
 
I wonder if the regrading of your alleged "frailty" was down to you having to forcefully challenge them so often about your diabetes management!! Mind you that should have earned you a "raging bull" upgrade I would have thought and rightly so! Really sorry to hear they are being awkward about your diabetes management again now. I really don't know how you contain your frustration.
 
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